Info And Resources

  

Standards of care for congenital muscular dystrophy

British Thoracic Society Guidelines for respiratory management of children with neuromuscular weakness (full version)

Breathe ON (Supporting families with children who need help to breathe)

Ventilation advice from Brompton Hospital

Guidance on breathing and non-invasive ventilation (NIV) for children from the age of two years old living with a neuromuscular condition

Outcome of goal-directed non-invasive ventilation and mechanical insufflation/exsufflation in spinal muscular atrophy type M. Chatwin et al (2010)

The Care of Congenital Myopathies - a Guide for Families

Long Term Non-Invasive Ventilation in Children: Impact on Survival and Transition to Adult Care (Hyperlinked to the attached document called TransitionPlosOne)


See Webinars on Scoliosis and Respiratory Management

Read a personal perspective on Scoliosis

 

 

Myotubular Trust joined up with USA patient organisations Joshua Frase and Cure CMD to arrange two webinars, one on Scoliosis and one on Respiratory Management, to help inform patients and families with myotubular and centronuclear myopathy and congenital dystrophies. There are questions and answers at the end of each presentation which may be helpful to you.

Please visit the pages for further professional and personal perspectives.